sunrise

The insidiousness of isolation is that it does not happen suddenly. It comes on slowly; creeps like a fog in the night and envelopes you in an impenetrable blindness without your notice. At least, that is my experience.

Choosing the home education lifestyle is stepping out of the mainstream. I was prepared for the backlash (more like uncomfortable silences and passive-aggressive self-defensive phrases) from friends, family, and society in general. I knew other home educating families and expected to be accepted into the homeschooling subculture. I sought a Utopian culture of acceptance and found myself, and my children, on the outside. I was so naive.

We didn’t fit-in from the beginning. I blamed it on differences of religious conviction or political ideology (some of that really is true…I’m not comfortable with evangelicals or socialists). We tried several co-ops, play groups, prayer groups and other little groups but no matter how hard I tried we just didn’t fit the mold. Eventually, the struggle to find a place to belong became a chore and I chose not to bother. We went our own, solitary way.

I have no regrets.

Today, I understand why we did not fit. We are a “special needs” family. I’ve known that our youngest was not quite like his siblings from a very young age. He is demanding and exhausting. His “otherness” emerged slowly. I noticed he didn’t hit those physical milestones like his peer group. Verbally, he was ahead of his peers. He had unusual obsessions. He danced to numbers and collected sticks that looked like letters. He carried a comb until every tooth fell off. I’ve always understood that he was different. But the understanding evolved slowly and gradually became isolating. All social outings became difficult from church to haircuts. He is an out of the box sort of child. I held his hand and let him pull me away from my comfortable places. After a while the play-date invitations stop and so do the calls and texts from other mom-friends. I’ve sat alone at a co-op meeting watching the other moms chat while some of my children were ignored or misunderstood by their peers. I was mad about that ostracization at first. These days, I think it gives me a wider perspective.

Just as I was beginning to accept all of this our daughter was diagnosed with an incurable autoimmune disease. She lives with chronic pain and sorrows. The pain and other constant reminders of her illness are difficult, not only for her, but for her family that misses the radiant child she used to be. I miss my sparkly girl. Her illness is just another different for us to be.

Years passed before I could even mention the phrase “special needs” to myself. Let alone speak the words or even write about it. Even now, I still do not feel comfortable using the term “special needs” to describe our family. I am a member of several support groups on Facebook for families and individuals with the various diseases and disorders from which Sparkles and Littlest suffer. The more I read and listen to these families’ troubles the greater I see the depth of our blessings. Littlest is very high functioning. Other than some social quirks and an unusual learning style he will be fine. With coaching he will learn to navigate the social sphere. Sparkles’ illness is manageable and as she gets older I believe she will learn to surmount her stress and triggers. When I listen to these other special needs’ mothers I feel so much compassion. I can relate but I know they would consider our family to be lucky. We are blessed to stand on the shore of what it means to be special needs and not drown in the ocean.

Even so, it is still isolating.

I’ve never been one to believe in randomness. I know these troubles will lead us somewhere as a family and as individuals. I believe Jesus is my friend and my God. He has a plan that I should trust. In the end this is all grace. Sometimes, I just need to remember to be awake with faith. I’ve spent the past year or so just getting through each day. Sleep-walking through life. Time for this sleeper to wake up and brush the dust off her Bible. We are being given a story to share and with faith we already have the grace to live each day.

“Look for yourself and you will find loneliness and despair. But look for Christ and you will find Him and everything else.” C.S. Lewis